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Pyoderma Gangrenosum around stoma

Posted by Mggy34, on Mon Jan 06, 2020 10:18 pm

I have had some skin breakdown around my stoma lately. It is terribly painful and keeps getting worse. My ostomy nurse said today that it was pyoderma Gangrenosum. She's got a treatment plan but said it could take a few months. Anyone else have any experience with this?? It really hurts and is causing leaks all the time. 

Reply by iMacG5, on Mon Jan 06, 2020 10:40 pm

Hi Mggy.  Sorry you're going through this.  Lots of us had skin issues of some kind or another and what worked sometimes for one didn't work for another.  Most of us have the utmost respect for the ostomy nurses.  All my experiences were good.  With the skin problem however, I might get an opinion from a skin doctor.  Hopefully you could do this without offending your nurse.

Wish you well.

Respectfully,

Mike

Reply by w30bob, on Mon Jan 06, 2020 11:21 pm

Hi Mggy34,

  I had to look THAT one  up!  YIKES!  Can't say I've ever had that or know anyone who has, but I feel for ya girl.  Mike, I don't know if an ostomy nurse could handle this one, it's pretty intense.  Here's a link to the Treatment section from Mayo.  Not a lot of info that you probably don't already know, but at least the rest of us can get up to speed on your rather rare condition.  I hope someone on here has some info/advice that can help you.  

https://www.mayoclinic.org/diseases-conditions/pyoderma-gangrenosum/diagnosis-treatment/drc-20350392

 

regards,

bob

 

Reply by warrior, on Mon Jan 06, 2020 11:36 pm

Hi and welcome. The thread and what you're looking for has been discussed in another forum here... I foget whereI saw it but it had some really good advice.. I think if you search topics you may find it. There are several that contributed to this.. It is very serious as you're aware.  I think a nurse won't be much help. SKin doctor would do it..  I wish I knew how to find that other thread.   don't worry someone will reply withthis same exact thing and advise.Good luck.- Warrior

Reply by Mggy34, on Mon Jan 06, 2020 11:52 pm
warrior wrote:

Hi and welcome. The thread and what you're looking for has been discussed in another forum here... I foget whereI saw it but it had some really good advice.. I think if you search topics you may find it. There are several that contributed to this.. It is very serious as you're aware.  I think a nurse won't be much help. SKin doctor would do it..  I wish I knew how to find that other thread.   don't worry someone will reply withthis same exact thing and advise.Good luck.- Warrior


I did read some of the previous posts....they were kinda old so I guess I was hoping for a more recent experience! Thank you so much for the reply! The more I google it....the worse it gets!!! 

Reply by w30bob, on Mon Jan 06, 2020 11:55 pm

Warrior,

  I did a quick search and came up with these.  Are any of these what you're talking about?  If the links won't load the topic titles are "Wound beside Stoma?" and "I Really Need Help with Ileostomy".

 

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=374

 

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=239

 

later,

bob

 

 

 

Reply by Mggy34, on Mon Jan 06, 2020 11:55 pm
w30bob wrote:

Hi Mggy34,

  I had to look THAT one  up!  YIKES!  Can't say I've ever had that or know anyone who has, but I feel for ya girl.  Mike, I don't know if an ostomy nurse could handle this one, it's pretty intense.  Here's a link to the Treatment section from Mayo.  Not a lot of info that you probably don't already know, but at least the rest of us can get up to speed on your rather rare condition.  I hope someone on here has some info/advice that can help you.  

https://www.mayoclinic.org/diseases-conditions/pyoderma-gangrenosum/diagnosis-treatment/drc-20350392

 

regards,

bob

 

Thank you! The more I read the more terrified I become! But it's rare and painful so that's pretty much par for the course for me! My stoma nurse assured me we'll fix it but a second opinion may not be a bad idea 

Reply by Bill, on Tue Jan 07, 2020 2:19 am

Hello Mggy34. Thankyou so much for sharing your situation with us, and thank you to everyone who has replied with useful information and links. I have not heard of this before, so it is a useful educational experience for me.

My thoughts got with you and I hope to hear how you get on with treatment. 

Best wishes

Bill

Reply by lovely, on Tue Jan 07, 2020 3:03 am

Hi Mggy34, I havelooked at this online and I am soory you are having these problems. This was the first I had heard of this.  I think I would consult a Dr. instead of a ostomy nurse, but you do what you think is best for you. I wish you the best and please keep keep us updated as it may help someone in the future.

Reply by warrior, on Tue Jan 07, 2020 9:05 am
w30bob wrote:

Warrior,

  I did a quick search and came up with these.  Are any of these what you're talking about?  If the links won't load the topic titles are "Wound beside Stoma?" and "I Really Need Help with Ileostomy".

 

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=374

 

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=239

 

later,

bob

 

 

 

Morning Bob.  I checked those links you posted.  No they weren't what i had seen.  Maggi did say she saw some posts on pg...but they were old. Old is good. Ha ha. But she's on the right track.  

Reply by w30bob, on Tue Jan 07, 2020 10:35 am
Mggy34 wrote:



Thank you! The more I read the more terrified I become! But it's rare and painful so that's pretty much par for the course for me! My stoma nurse assured me we'll fix it but a second opinion may not be a bad idea 


Hi Mggy34,

  Yeah, sometimes reading about things on the old Internet can scare the crap out of you (no pun intended).  Sometimes I wish I could go back and un-see some of what I've found on here. But in some sense I guess it's good to know how bad things can get and there's some comfort in knowing you're not THAT bad.  Unless of course you are THAT bad (or worse), and then that REALLY sucks.  Don't think you're alone in regards to "rare and painful", I think many of us on here have had more than our fair share of that, and many expect more of it in the future.  So we're all right there with ya, and remember that whatever doesn't kill ya just makes ya stronger.  Until of course, it kills you. At which point it doesn't really matter anymore.  So welcome to the Few, the Brave, the Strong...........the MARINE......no......not the MARINES..........the OSTOMATES!  Booo-Raaah sister!

regards,

bob 

Reply by ron in mich, on Tue Jan 07, 2020 11:03 am

Hi all i think i saw an article about this on the uoaa.org site, sometimes they have what i cant find here on this site. 

Reply by Mggy34, on Tue Jan 28, 2020 7:09 pm

Just an update in case anyone else ever gets this...my surgeon prescribed steroids. I just crush a prednisone tablet, put it directly on the bad spots, cover it with a wound dressing, and put on my appliance. The pain was gone within two days....it was amazing. Almost healed up!!! 

Reply by warrior, on Tue Jan 28, 2020 7:21 pm
Mggy34 wrote:

Just an update in case anyone else ever gets this...my surgeon prescribed steroids. I just crush a prednisone tablet, put it directly on the bad spots, cover it with a wound dressing, and put on my appliance. The pain was gone within two days....it was amazing. Almost healed up!!! 


this is good to  know. thank you for sharing. Wow Pred tablets crushed? so simple.. Wasn't there  a steriod cream avaialble? I guess Cream would not allow  adhesion.. hmm.  geez crushing tablets. simple fix. Glad it worked for ya.   must be incredibly relieved.  thanks again for following up with  us... Warrior

Reply by iMacG5, on Tue Jan 28, 2020 10:59 pm

Hey Mggy, Thank you so much for sharing your experience.  So glad you asked the right person and got what you needed.  Hopefully your ostomy nurse will consider your effort educational and she or he will advise consultation in a similar situation.

Appreciate the great news,

Mike

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